Late 20's/early 30's TNBC

jujubee83

I was really looking for a post that targeted my age range. If anyone sees one, please let me know and I will drop this one. 

I was diagnosed November 2013 at the age of 30. My BRCA's came back normal so I'm kinda left wondering how I got this. Only other person in my family to have any kind of cancer is my maternal grandmother. She was a 20+ year breast cancer survivor, but succumbed to a new lung cancer. I have always been the closest grandchild to my grandmother and in many ways I feel like I have her with me while I go through this. I wish I could find out more about her cancer pathology and see if there is maybe another link. I know there are less common genes that are linked to breast cancer, but with my insurance they won't fund them (which I think is a load of crab seeing as it could possibly save my daughters). I'm still fighting this and hopefully one day, testing for ALL genes will be made available. 

I just turned 31 this January and have 3 kids (11,6,3) and a wonderful, supportive husband. I'm hoping to find people my age going through the same thing so we can do this together. 

I'm also curious to know how you found your BC and was it easy to get screened?

lmcclure4477

Hi!

I was 35 when I was diagnosed last year. I also am BRCA negative and have no family history. My grandmother was diagnosed at age 78 and she is still alive 9 years later. They told me that is not considered family history since her age was old at the time of diagnosis. She was hormone positive where I am triple negative. I went through chemo and had a double masectomy and I am 9 months from my last chemo. I tried to change my lifestyle significantly to help prevent a recurrence but I live in fear of this beast. I am supposed to get a breast MRI in match but my breast surgeon said they may not cover it because I was stage 1 and had a masectomy. I think that is crap!  I had no other scans besides a chest X-ray and blood work. It is kind of scary that I didn't have other scans but I don't want then now because I don't want the unnecessary radiation. 

I also have children age 7 and 3. It scares me that this beast could kill me while they are still young. If you have any questions, let me know!!

jujubee83

What was your chemo regimen? How did your kids do with the whole thing? That is crap if they won't cover the MRI. Cancer is cancer. I am also afraid that this will come back, but I plan to make drastic lifestyle changes to reduce as much risk as possible. I read that they were doing a study with blueberry juice on TNBC. They found that 2 cups a day stopped tumor growths in rats. I figure if it works for them it can't hurt and I love blueberries. I'm looking forward to when all the treatment is over, but it gets overwhelming with only one  infusion under my belt. Im not looking forward to the next 5 months. Besides the fear of reoccurrence, how is life after?

lmcclure4477

They approved my breast MRI at the time of diagnosis but my dr thinks they won't cover it now since I had a masectomy. I am hoping they do but I am not looking forward to test anxiety again. 

I had dose dense chemo of adriamycin, cytoxen, and taxol. What is your treatment. Since I was stage 1 with clear margins, I didn't qualify for radiation. 

My kids handled it pretty well. My daughter was only 2 at the time and my son was sick. I told him I was sick and bedded medicine to make me better but since the medicine has to kill the bad guys it also kills the good guys so I would be sick and lose my hair. I not once mentioned cancer because my father in law passed away from pancreatic cancer a few years ago and I didn't want him to associate cancer with death. He was really good through it all. I was the one who was a mess!

Life after is great!  I live everyday to the fullest and I feel the best I ever have!  I eat well and exercise everyday!  I am actually training for a half marathon to do this summer!  The only thing is that I have anxiety and live in fear of this beast coming back. Anytime I feel sick or get an ache or pain, my mind automatically goes to cancer. 

How are u holding up with the chemo?  I actually handled it pretty well. I had bad days but since I went every two weeks I felt pretty good the week I didn't get treatment. 

triplenegativebc

Hello. I'm 29 years old and I was diagnosed with triple negative, grade 3 stage 3 breast cancer  with several positive nodes in August 2013. I had dose dense neoadjuvant ACT chemotherapy. I had a lumpectomy with a lymph node dissection in January. I started radiation this week. 

I tested negative for BRCA 1 and 2. Then, I completed a whole "breast next" panel that tests all the genes commonly associated with breast cancer. The genetic results showed no abnormalities at all. My sense is that doctors are still trying to figure out what the heck all this genetic stuff means. Even when they offered the breast next panel to me, the warned me that aside from BRCA1 & 2, even if there were an abnormality, there wouldn't be much they can do with the results. My mom had breast cancer after menopause when she was 57, but it was not triple negative. 

I'm glad that there were no genetic abnormalities, but it puts me back at square 1 in terms of what the heck caused this and what I can do to keep it away. 

EDIT: I just realized you asked how I found it. I had a lump under my armpit that felt like a golf ball. I went to my regular doctor that day. He felt the golf ball (turned out to be several positive nodes stuck together) but then also felt a lump in my breast. I went straight to the hospital. I got a mammogram, ultrasound and biopsy that same day. I was confused about why my routine paranoia attack doc apptmt was taking so long. When the dr. who performed my biopsy gave me the names of breast surgeons (before even telling me I had cancer) I knew I was in trouble. My family got a flight that night across the country. I got the biopsy results the next day. I started treatment ASAP. What a whirlwhind!

SaturnRing

I was 34 when I was diagnosed with TNBC. No family history of any sort of cancer and no BRCA genes either. It is still a mystery as to why I got it in the first place. Anyways, things are settling to where it should be and life after treatment is looking good.

Very similar sounding story to others, Lump popped up overnight , one good thing was I didn't delay in getting mammo, US and biopsy. I was diagnosed on Apr 2012, Friday the 13th. And decided I need that thing off my body immediately. Loved the breast surgeon I saw on 16th and got double mastectomy on Apr 19th, (just 3 days later). Recovered with no incidents and off I went to MO within 10 days from surgery to get started with full body scan ...blah blah blah and the process got started from there.

lmcclure4477

I was 35 when diagnosed, no family history and was negative for the BRCA genes. When they did a risk assessment my MO said I have no idea how you got this because you were so healthy. I also find it hard to figure out what caused it and what to do to prevent it from coming back. I made a lot of lifestyle changes so I hope that helps to keep me cancer free!!

DeeW29

I was dx in July 2013 at the age of 31 with triple negative breast
cancer. The left breast is where the tumor was found. I started chemo at
the end of July 2013 with 12 weeks of Taxol and 4 weeks of AC. I
finished chemo the week before Christmas. I was on a study drug two
weeks before receiving the Taxol and every week with the Taxol. Within a
month's time, the tumor was gone, but I still continued my treatments. I
had a mastectomy (both breasts removed) in January 2014. There wasn't
any lymph nodes involved, that surgery was one week before the
mastectomy. The pathology report stated I had clean margins, no sign of
cancer and a complete response. My oncologist and breast surgeon
suggested for me not to have radiation.  My doctors felt
as though I don't need it due to a complete response and no nodes
involved. But, I'm now wondering if I should have gotten the radiation. Has anyone else had this issue?

BikerLee

I'm a bit older than the subject line calls for, but I'm a person who lives life like a person substantially younger... and I have a child...  and my career is going well...  and I'm a competitive athlete...  So I hope you don't mind me responding!

Dee - if you had a bilateral mastectomy and clear margins... complete pathological response... My understanding is that unless your tumor was large to begin with, rads are not called for.  Your experience is somewhat similar to mine - I had a complete pathological response.  I had a bilateral mastectomy, and the pathology report was music to my ears!  Anyway, because my tumor came in just below the threshold for go-directly-to-rads size, rads were not recommended for me, and I was grateful.  

I'm curious about your study!  I had carboplatin + taxol + ABT-888 during phase one... and then AC only during phase two...  I was enrolled in the ISPY2 clinical trial.  I also had no evidence for node involvement (phew!!!!!).

I also had the "When they did a risk assessment my MO said I have no idea how you got this because you were so healthy." response from my care team.  I'm a long time vegetarian (now almost completely vegan)... athlete... blah blah blah.  I shouldn't have gotten this, but I did.  I don't know much about my birth family's health history, sad to say...  although I do know that breast cancer and ovarian cancer are not common...  So I don't really have a handle on what kinds of inherited risk I may or may not have.  As for genetic counseling, I decided against since we adopted our child, with no plans for birth children.

As for anti-cancer foods, I focus on eating a serving or two or more of cruciferous veggies nearly every day... Usually, two is easy...  Three sometimes...  I feel like dairy is not something people should be eating... I do eat a bit of egg here and there...  Otherwise, I'm pretty much vegan.  My struggle, to be honest, is sweet treats! I eat hippie style sweet treats, but I often think I should really focus on keeping sweet things out....  I like dark chocolate and beer, though...  Those two things are ....  wonderful. Sigh....

lmc...  AWESOME that you're training for a half marathon - that's great!!!!!

Hope everything has a lovely afternoon.

aeryno

Hi jujubee83, 

I was 35 when diagnosed April 2013 (I turned 26 in May 2013).  My paternal grandmother had breast cancer at 58 and had a mastectomy (that's how they treated it then), it came back at 85 and had radiation but died.  That's it on my family history. Negative on the BRCA1/2 and even did the next test for the rare Li Fraumeni syndrome which was negative. Some of the thinking I encountered throughout is that a) environment, what happened at puberty (i.e. did you have your period early, did you eat lots of high fat foods when you were developing, etc.) could be a factor or that b) there are genes we haven't discovered which may case BC. I grew up in a steel and coal mining town (which also has high levels of radon in the ground) so I'm guessing that could very well have been a factor!

I discovered my lump while watching TV one night.  Just had some sharp pains in my breast and grabbed my right side and felt the lump.  Called my gynecologist and scheduled an exam.  After meeting her I got in for the mammogram & ultrasound the following week. After the mammo & US they decided to do the biopsy right then. That was Tuesday and on Friday I was called with the diagnosis.

Met with some great docs but who were (at least) an hour ride away on the freeway so it took a week or so but then I got in with a MO close to home. Met with the surgeon the week after and was scheduled for a lumpectomy first week of June followed by chemo & rads. Went in for surgery on a Thursday and turned out the tumor had grown so surgery cancelled and started chemo that Monday.  Had 4 rounds of dose-dense EC followed by 12 weeks of Taxol.  Lumpectomy in November (pathologic complete response!) and rads were five weeks beginning in January.  I'm one month post last rads, had follow-up with RO and MO last week and all is well.  Scheduled for new follow-up mammo and US April 2.

You can keep trying to fight your insurance on the other tests.  Perhaps your doctor's office can contact them and plead their case?

What is your chemo regimen?

Good luck!

MrsHerrera80

Hi everyone. Im 33, was diagnosed with stage 1 Grade C TN breast cancer 3 weeks ago. My surgery is in two days (3/14) I chose double bilateral mastectomy since im also BRCA1+ I've been married 14 years to my best friend. We have daughters that are 15 and 13. 

Im trying so hard to stay positive but worst  case scenarios always pop in my head. I've known about my brca gene since 2009 but chose surveillance over prophylactic surgery.  I always did very regular self examinations and have lead an extremely healthy and active lifestyle. But I still got it. Fucking cancer does not discriminate. 

Sorry im just really pissed off that I have to put my family and friends through this.

Meghan619

I am 31 and just diagnosed with triple negative. I start chemo first, in a week or so. I have my education day on Tuesday. How are you doing and have you started treatment?

made2b2gether

Hi Meghan. Sorry you are here but i believe you will find a lot of support here and on the triple negative foundation website.

My wife (age 28) was diagnosed in Jan with TNBC and is on Chemo. Right now on her 8th taxol which will be followed by a month to recover and then FEC.  She is handling the side effects fairly well on the whole.  Its a difficult time but as you know your treatment plan, things will hopefully get smoother. Important thing is that you are having this treated.

Please stay positive and strong. Take good care of yourself and wish you luck with your treatment. All will go well. Stay well. Best wishes.

d.

Allydp

Hi all, I'm 33 and was diagnosed back in January - 2.4 cm, stage IIa, grade 3, node negative. Hubby and I had been trying for our first baby and undergone fertility treatments in 2013, so I thought for sure I was ER+ or PR+, but nope. I should be getting genetic testing back any day now, but my paternal aunt, which is the only other female on my dad's side, was diagnosed triple negative in her 40's. She had had a recurrence in her 50's, but is now a survivor at the age of 71 and such an inspiration to me! The genetic counselor gave me a 66% chance of carrying the BRCA gene, so we'll see. I'm still intent on carrying a child after I beat this thing, so if that's the case, we'll have a baby 3 years post treatment (God willing!) and then I'll have a hysterectomy. 

I'm doing ACT and currently on chemo #2. Despite some symptoms creeping up, I'm doing really well and hope things stay this tolerable. I plan to have a BMX with implant reconstruction this August. Just the other day, however, I got the courage to feel my tumor again and it's definitely smaller! It's such a huge relief to know the chemo's working! with how much it's shrunk, I've got my hopes up for a complete response.

Mrs. Herrarra, I hope surgery went well and wish you a speedy, pain free as possible, recovery!

Deew29, I was told that because I'm node negative, no rads is necessary. Best wishes to you! 

skc2012

Hi jujubee83

I was diagnosed at 34 (in 2012) with TNBC. BRCA negative and no family history of cancer. I have recently heard about some new genetic tests that may now be available- do you know what it's called? I'd like to ask my doctor about it. 

On a separate note, hang in there! You will get through it. It is temporary and will be over. I am 9 months past completing all treatments and I feel completely back to normal. Most of the time I don't even think about cancer and when I do, it's just something that I persevered through and it gave me confidence about my own strength (that I never knew I had! I did Avon Walk for breast cancer last fall in San Francisco, 26 miles in one day!! So I think I can say my energy is back I do have doctor check ups with oncologist every 3 months, and I alternate MRI and mammograms every 6 months. If you are getting anything less, you should challenge your insurance. I was initially denied MRI (twice) but my doctor (at Stanford hospital) fought it on my behalf and we got it approved and covered. I think it is critical to have a doctor who will champion for you and a medical facility that has a department that specifically deals with insurance so they can help you. 

How are your kids doing? My son is 10 and my daughter is 2.5. Little one didn't really know what was going on. My son showed such incredible compassion and understanding when I was going through treatment. Kids are very resilient in dealing with challenges and they also quickly forget the bad stuff. My son doesn't seem to worry about it anymore. So I would say life after cancer does return to normal. There is some advantage with TNBC as we don't have to take hormone meds or other ongoing treatments. So when treatment is over, it is OVER! And if it does not recur in 3 years, then changes of it coming back start dropping off significantly. 

DeeW29

Thank you Allydp!

Hi BikerLee,

Thank you as well. The study drug I was on is called MM-121 also called an anti-ErbB3 human monoclonal antibody

jujubee83

I'm so glad to hear the survivors thriving and going strong. It gives me hope that life will return to normal after. I do have a fear of not remembering what "normal" is. Always having the fear of it coming back. This is gonna be a year long trial. I'm happy to say I've finally finished my 4 rounds of a/c. These rounds really hit me hard and now that they're over, I'm hoping to be more active on this post. I'm very intrigued that a lot of us that are TNBC are also brca1&2 normal. And for those who have had the second panel done, that also came back normal. I know I will never know how I or any of us got this, but I can't help to think it has something to do with environment. Since being diagnosed, I've made some changes (changes that have gotten me called crazy) like dumping my microwave. It always sat on the counter right at breast level. Has anyone else made "crazy" changes?